A Longitudinal Study of Mental Health Consumer/Survivor Initiatives: Part III A Qualitative Study of Impacts of Participation on New Members

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1 A Longitudinal Study of Mental Health Consumer/Survivor Initiatives: Part III A Qualitative Study of Impacts of Participation on New Members Joanna Ochocka Centre for Research and Education in Human Services Geoffrey Nelson Wilfrid Laurier University Rich Janzen Centre for Research and Education in Human Services John Trainor Centre for Addiction and Mental Health Special thanks to Becky Choma, Research Assistant, for her work on data analysis. Direct requests for further information about this study please address to Joanna Ochocka, Centre for Research and Education in Human Services, 73 King St. West, Suite 202, Kitchener, ON, Canada N2G 1A7, joanna@crehs.on.ca. 1

2 Abstract This article examines the outcomes of participation in mental health Consumer/Survivor Initiatives (CSIs) and identifies helpful qualities of CSIs from a longitudinal, qualitative study that involved in-depth interviews with people who experienced serious mental health challenges in Ontario, Canada. We used a non-equivalent control group design in which we compared active participants in CSIs (n=15) with non-active participants (n=12) at baseline, 9, and 18-month follow-up intervals. Compared with non-csi participants, CSI participants reported more stable mental health, enhanced social support, and sustained work, stable income, and participation in education and training at 9 and 18-month interviews. The helpful qualities of CSIs that participants reported were: (a) safe environments that provide a positive, welcoming place to go; (b) social arenas that provide opportunities to meet and talk with peers; (c) an alternative worldview that provide opportunities for members to participate and contribute, and (d) effective facilitators of community integration that provide opportunities to connect members to the community at large. The findings are discussed in terms of previous research in selfhelp and consumer-run organizations in mental health. 2

3 A Longitudinal Study of Mental Health Consumer/Survivor Initiatives: Part III A Qualitative Study of Impacts of Participation on New Members The purpose of this article is to describe the impacts of participation in Consumer Survivor Initiatives (CSIs), mental health consumer run organizations, on individual members and to clarify the helpful qualities of CSIs. More specifically, the present article concentrates on two research questions: (a) Do CSI members show better outcomes then non-members?, and (b) What do CSI members report as the helpful qualities of CSIs? By individual outcomes we mean the benefits and impacts of participation in CSIs on people s well-being. Methodology Sample From the larger sample of 118 participants (61 active and 57 non-active), we gathered qualitative data through in-depth interviews with a sub-sample of the participants. A total of 26 participants (14 active and 12 non-active) completed all three interviews, and one other active participant completed the baseline and 18-month interviews. Activity status was determined by the number of hours of participation in one of the four CSIs participating in the research. Active participants were those who participated four or more hours in one of the CSIs over a period of 16 months, while non-active members were those who participated less than four hours in a CSI. The participants for the qualitative interviews were purposefully selected by the researchers. We strived to have a mix of younger and older members, men and women, across each of the four CSIs. The larger sample of active and non-active participants did not differ significantly from one another at baseline on demographic, psychiatric history, or outcome variables. 3

4 Interviews The in-depth, semi-structured interviews typically lasted one to two hours and were conducted at the CSIs or at the participants homes. The purpose of these interviews was to obtain a narrative on personal changes over a period of 18 months. The interviews covered topics such as what life was like when mental health problems were first experienced, past experiences with services and supports, and personal life changes that occurred in the 9 months leading up to the interview. We also asked each participant to describe a typical day in her/his life. Consumer/survivor researchers conducted almost all of the interviews. In many cases, the same interviewer conducted all three interviews (baseline, 9, and 18 months). Many participants were struggling with a variety of issues, and the consumer/survivor researchers were trained to provide all participants with information about services and supports that might assist them. All participants were free to become a member of the CSI in their community at any point during the study. Our experience was that the vast majority of participants felt quite comfortable with and appreciated having a consumer/survivor researchers conduct the interviews. Data Analysis The data analysis was inductive in nature. That is, concepts, patterns, and themes emerged from the data throughout the process of data collection and analysis. All interviews were transcribed and sent to the participants, allowing them to check the transcript for accuracy and make any changes they deemed necessary. The researchers interactions with the data started with open coding (Strauss & Corbin, 1998) and a bottom up method of finding interconnections among pieces of collected data. This method of analysis is known as grounded theory and emphasises systematic rigour and 4

5 thoroughness (Glaser & Strauss, 1967). This process allowed us to generate a theory that best fits the data. The qualitative software program NVivo was used for the data analysis. Two different researchers coded the data. The authors of this article were involved in data analysis and met several times to discuss meanings and interpretations. Finally, four feedback meetings with all study participants and other community members were conducted to present the research findings and to check for accuracy and confirmability. The discussions among the researchers and the feedback process helped to ensure the trustworthiness of the analysis (Denzin & Lincoln, 2000; Patton, 2002). We do not report on all of the codes in this paper. Rather we focus here on those codes that reflect differences between the active and non-active participants over time. To ascertain codes that differentiated these two groups, we used matrix displays comparing active and non-active participants at each of the three time periods for each code (Miles & Huberman, 1994). Findings In this section we report first on the outcomes of participation in CSIs and then on the helpful qualities of CSIs for member growth and recovery. Outcomes of CSI Participation There are three main findings from our qualitative research regarding the impacts of CSI participation that differentiate active and non-active participants overtime: (a) improved mental health, (b) stronger social support, and (c) increased independence in terms of work, income, education, and training. 5

6 Improved mental health. At baseline the majority of both active and non-active participants talked about mental health problems, describing symptoms such as being stressed out, feeling depressed, staying in bed for weeks, having no energy, not being able to sleep or eat and worrying about the future. Some people expressed feelings of being very dependent on doctors or social workers and reported feeling helpless, hopeless, and powerless most of the time. Others felt very lonely or isolated, were losing faith in recovery, questioned their own sexuality and/or did not want to live anymore. I don t have any direction that I am going in right now. I haven t really gone to anything in months, I haven t been involved in anything and I have ended up not going out at all. I am tired a lot too. (active CSI participant) A number of participants said that they felt suicidal or contemplate suicide and experienced a lost of self-control. As one person described, I just got more and more depressed. My suicidal thoughts became deeper and more planned. I was upset at least once a day if not more. Another person said, I have gotten worse. I felt like killing myself most of the time and self harm, mutilation. I was tired, I had little motivation, low energy. I had no real direction. I found things very stressful because I was lonely and filled with anxiety I was having a lot of difficulty in coping. I felt like there was some deterioration in my mental well-being because of all this anxiety and stress. (nonactive CSI participant) Mental health was often linked with other situational struggles. Participants disclosed childhood traumas, including physical and sexual abuse, and talked about external circumstances such as lack of sufficient income or housing, problems with 6

7 relationships, inadequate formal/informal supports, and inappropriate medications as causing them a lot of stress. I am going through a lot of traumatic things emotionally. It caused anxiety worrying about it. It distracted me from wanting to do other things. (active CSI participant) Over time, the number of CSI participants who reported mental health problems decreased substantially, while non-active participants continued to report mental health problems. Specifically, 10 of 16 active CSI participants reported mental health problems at baseline; 7 of 14 reported mental health problems at 9 months; and only 2 of 15 at 18 months. Among non-active CSI participants, the number of those reporting mental health problems remained fairly constant over time (9 of 12 at baseline; 7 of 12 at 9-months, and 6 of 12 at 18-months). When talking about improved mental health, participants used the following statements: feeling healthier, feeling stronger, feeling normal, experiencing fewer symptoms or health problems, feeling less embarrassed or less hopeless, feeling selfassured, and becoming more assertive. As one CSI participant said: Overall I just feel better. I don t feel hopeless around and unsure of what to do now. Before it felt like I had no opinions and I was trapped. (active CSI participant) Stronger social support. At baseline most of both active and non-active participants reported having social support in their lives (12 of 16 active and 10 of 12 non-active). Over time, active CSI members were more likely to maintain and strengthen social support compared with those in the comparison group. At 9 and 18-months more 7

8 active CSI members (13 of 14 at 9 months; and 12 of 15 at 18 months) than non-active (5 of 12 at 9-months; and 6 of 12 at 18 months) reported having social support both through the CSI and from other settings and relationships. At 9 and 18-month active CSI participants indicated that participation in CSIs had given them opportunity of meeting peers, of broadening their networks, and relearning how to socialize with others. They emphasised the importance of talking with people who experienced similar situations and of feeling connected to them. Some active participants indicated that they felt more supported and stronger by being able to share their thoughts with others and by receiving feedback and input from other people. Meeting other people who are like me was a great help. Talking to people who understand what I was trying to convey. To be able to describe what that feels like, oh wow! I am not alone and that is the main thing. (active CSI participant) Stronger social support was about normalizing what participants previously viewed as abnormal and exploring different ways of understanding one s own behaviours and feelings. It was about having rapport and being connected to others when exploring life issues and challenges, about learning from others and contributing to others lives. [At the CSI] I met a lot of people who were schizophrenic and sometimes we would get into a talk about negative and positive schizophrenia and all of a sudden we have a rapport and we know exactly what each of us is going through. (active CSI participant) The sustained social support reported by active participants was also about making friends and expanding networks. One person said, I made friends. Peers. I participate in a social circle and the meditation group. I have people around me. Another 8

9 participant indicated that new relationships made at the CSI broadened the number of people she associated with and knew in the community. I met new people and have spent a great deal of time talking with them. Maybe not becoming best friends now, but at least if I see them on the street or they see me in a mall we know who we are and can say hi. (active CSI participant) Active CSI participants talked about experiencing increased social support in terms of getting back in touch with people from other settings and relationships. Their participation in the CSI facilitated socializing and rebuilding relationships with others outside of the CSIs. One active CSI participant said, [Participation in the CSI] helps me to get out and do some socializing [in the community] so I don t get too withdrawn and housebound. Another active participant added, I ve just started to getting back in touch and started hanging out with people I didn t talk to for years when I wasn t feeling good. Sustained employment, income, education and training. During the interviews study participants reflected on their employment, income and involvement in education and training. We combined these three codes into one category. Generally, both active and non-active participants reported similar levels of employment, income, education, and/or training at baseline (9/16 active and 8/12 non-active). At the 9-month and 18- month interviews, more of the CSI participants (10/14 at 9 months, 11/15 at 18 months) than comparison group participants (6/12 at 9 months, 4 /12 at 18 months) reported being employed, having sufficient income, and/or being involved in education and training. CSI active members were also more likely to maintain employment over time than non-active participants. 9

10 Active participants were involved in paid work more often than non-active participants. Active CSI participants spoke about employment as a source of both independence and stress. They emphasized the positive aspects of feeling free, not dependent on government financial support, and of being financially more self-sufficient. They also pointed out that employment was a source of anxiety and pressure. Having to live up to peoples expectations in a work environment was always very challenging I feel really good about going to work, but it is a struggle everyday. I don t think it is ever going to be a perfect environment for me, it never is, but I do feel a sense of accomplishment. (active CSI participant) While active participants emphasized stress attached to employment, non-active participants talked more about problems in finding jobs, highlighting the stigma associated with mental illness as a big obstacle. One person expressed in-depth how much frustration people feel when going through the process of finding employment. The lack of employment is a biggy and I am not getting anywhere there. I've been lucky enough to drop off resumes at places and have them place my resume in the circular file. Even before I ve left the building there's this laugh, and I know that there goes my resume into the garbage. So boy, am I wasting my time? I don't know, [I am frustrated] because I just don't know why I'm not getting that many chances for employment. (non-active CSI participant) More active CSI members than comparison participants in the 9-month and 18- month interviews addressed positive changes regarding their financial situation. For both active and non-active participants, lack of sufficient income was a constant struggle and source of tension. Most people relied on family and government for a source of income. 10

11 Sufficient income was a foundation of feeling more independent, making desirable decisions, living in a better apartment, and eating better food. Also, lack of income was listed as an obstacle to participating in the community. I need a change in income. I need more money to get out for a movie or to have appropriate food. Better diet. (active CSI participant) At 9 and 18 months more active participants were involved in education and training than non-active particpants. Participants listed four different categories of their involvement in education and training activities: formal education (e.g., college, university), job training (e.g., computer training), educational training (e.g., job searching), and informal education (e.g., educating self about own illness through internet). Educational efforts were linked to feeling stronger and healthier and to feeling more in control. I did well in my first semester courses. That gave me something to stand on. I felt like I'd accomplished something. I felt like I had what it takes to get through the rest of it, which made me feel stronger. (active CSI participant) A number of the active participants reported gaining control over their mental health treatment by researching their illness on their own. People talked about the importance of constant learning and of becoming well informed about their mental health struggles and various types of therapy available. Self-education made some participants decide on their own treatment. No, I didn t have schooling... I didn t have the energy anyway to do any of those kinds of things. The only thing that I did is I self educated myself on the illness through the internet and through books. I started understanding what it was the 11

12 doctors were saying that I had. This way I could feel educated and feel comfortable with the diagnosis. Even though I was sedated it was really hard for me to accept the diagnosis, so the only way I could truly try to come to terms with it was to educate myself on it. (active CSI participant) Helpful Qualities of CSIs Our qualitative study clearly showed that CSIs play an important role in supporting people with mental health challenges. The active participants reported a number of helpful qualities of CSIs that they believed foster empowerment, growth, learning, and participation. The four helpful qualities that emerged from this study were CSIs as: (a) safe environments that provide a positive, welcoming place to go; (b) social arenas that provide opportunities to meet and talk with peers; (c) an alternative worldview that provide opportunities for members to participate and contribute, and (d) effective facilitators of community integration that provide opportunities to connect members to the community at large. CSIs as safe environments and welcoming places. For a number of participants, CSIs were a place to go and to spend some time among others. Many people valued the opportunities to have a welcoming place to drop in and a place to which they could belong. Well, it is the getting out to here because otherwise I would be sleeping all day. If I didn t have a place to go every day I would be sleeping and then I can t get out of bed, and I feel bad. (active CSI participant) 12

13 Active CSI participants stressed that a helpful quality of CSIs is the non-judgemental atmosphere. CSIs were recognized as places where people felt fully accepted and valued for who they are. I became a member and asked to get the newsletter until I could start coming. I felt really welcome. I also felt like everyone was really accepting me and like it didn't matter what had happened to me before I just always felt that I didn't have to explain myself, people understand. They assumed that you were worthwhile to begin with instead of the other way around, like I feel other times when I have to prove myself to other people. (active CSI participant) CSIs were acknowledged as safe and accepting environments. Active participants underlined the positive, informal, and friendly atmosphere of CSIs and the welcoming environment in which they could openly express their feelings, talk about their illnesses, and find information and resources. It is very pleasant, helpful, you feel at home here. You have a coffee and if you can afford to throw in a quarter, it helps out. It is somewhere to go and to talk with others. (active CSI participant) CSIs as social arenas to meet and talk with peers. Active participants talked about CSIs as important social arenas. The CSIs were recognized as particularly helpful because of the connections that the participants were able to make with others who experienced similar mental health issues. The socializing aspect of it was a big factor for me; a chance to be with other people. It was good for me to socialize and to get me out from my apartment. (active CSI participant) 13

14 Relating to others who are in a similar situation was mentioned as an important factor in recovery. As illustrated in the quote below, CSIs offer something unique. They provide members not only with the opportunity to interact with others and share similar experiences, but also with opportunities to learn strategies for coping with life s troubles and supporting each other. When I talk to people, I see that I am not the only one that it helps, because I get down in the dumps sometimes and I fight with it Talking about it really helps, talking to someone who is going through rough times. It helps to talk. (active CSI participant) CSIs as an alternative worldview that provide opportunities for participation. CSIs were recognized as places that encourage people to become active. The invitation and opportunity to participate in and to contribute to the organization and the mental health community were acknowledged as significant in finding meaning and direction in life. Active CSI participants stressed the importance of the CSI philosophy that encourages action. Yeah, there's a lot of stigma around mental illness. I think I said before that there's a big difference between just feeling that way, versus coming to an organization that does accept you and do things together with all the people and actually have mission statements about it. (active CSI participant) CSIs offer worldviews and ideologies that help to make sense of individual experiences, and that help to provide purpose for collective actions. Active CSI participants reported on the importance of discovering that the problem is not personal, but social, and can be addressed by undertaking social and political action. 14

15 It has given me purpose in my life. [I now have] things to do and the people I have met are great. We started doing the same things together, [which is a] big difference for me and all of us. (active CSI participant) CSI active participants talked about the mutuality of experiences and the importance of re-examination and reinterpretation of stressful life experiences. CSIs offer an alternate worldview for recovery. So, throughout that whole thing you get to learn about the philosophy here [at the CSI]. I just think it s really important. I really believe in that message, in trying to make people understand, the education point of it. Now I feel like I m more on my feet. I feel completely in control now as compared to then. I know what to do and I feel I could actually call myself healthy mentally. (active CSI participant) CSIs as effective facilitators of community integration. Finally, active participants reported that CSIs were helpful in linking members to other people living in their communities and to other community settings. Members learned that they have a great deal to offer others and to contribute their knowledge and ideas. I can see myself getting more involved in the community and I have some ideas about running groups. I have watched people and I have my own ideas about how it could be more effective than that way it is going right now here. I can do it for others. (active CSI participant) CSIs not only offered people an alternative worldview, bu 15